Euthanasia is in the House

On 20 September my fellow lobbyists climbed the iconic steps of Victorian Parliament House. I wheeled my walker around the back to the accessible entrance. I leaned into a bracing Melbourne morning wind, my long hair insisting on flying across my field of vision. Once through security, I walked a cold bluestone corridor to one of the oldest elevators in town. Up a level, a further mini-lift to the public gallery, where I parked my wheels and flopped down on a comfy green velour bench. I slowly settled, with a quietening sense of ceremony, to hear the second reading of the Voluntary Assisted Dying (VAD) bill in the parliament.

I took in the ballroom-style arched ceiling, pendulous crystal chandeliers, cream and gold Georgian columns flanking the speaker and the smell of cleanness and new carpet as perhaps two dozen of our state members slowly filed into the chamber, each standing to attention before a great golden sceptre and nodding to the speaker as they entered. The wooden backrest of the bench dug into my bony ribs and spine, so I asked the girl next to me to shove my scarf behind me as a cushion. But apart from that the codeine was doing its job, and I was comfortable.

I drew the short straw when it comes to health. An insidious autoimmune disease presented itself in my twenties, early in my nursing career. Scleroderma is rare. It hardens the soft tissues, giving me the muscle and movement of an elderly woman (I’m forty-three). The severity varies – again, the short straw. Muscle pain, breathlessness from lung fibrosis and a gut that doesn’t like to digest even mashed potato. Hands that are severely clawed, and chronic, infected ulcers. Fatigue, some difficulty speaking and eating. I’m 174 centimetres tall, I weigh forty-eight kilos, I have severe osteoporosis and chronic anaemia. I’ve had two surgeries so far this year, with two more to go, that I’m aware of. I use voice-to-text or type with two thumbs.

I’m not likely to have a good innings. My death is likely to be a toss-up between lung failure (oxygen, gasping, eventually asphyxiation)­­­ and failure of my gut – starving to death. I could live on IV nutrition for a while, but not indefinitely.

Many terminal illnesses end this way. Heart failure causes lung failure, as does brain cancer, and many other conditions. Malnutrition and starvation are also common untreatable causes of death in terminal illnesses. My disease is relatively stable right now, but it’s unpredictable. It ‘flares’. Each time it flares, I wonder if this is the flare, the one that will finish me off.

Yep, I live in fear – but I don’t intend to die by slow asphyxiation or starvation. If my doctors tell me that they think it’s highly likely I’m dying, that they have no further drugs to try to stabilise me, and there is no VAD law in place, I’ll take matters in to my own hands one way or another. That’s a story for another day.

It is not uncommon for dying people who are suffering badly to refuse food and fluids while they are still able to eat and drink, in order to hasten death. Some terminally ill people make the trip to an overseas jurisdiction while they are still well enough to fly and take a drink, meaning that they usually die significantly sooner than they would wish to, still in functioning health. Others choose to kill themselves while they still have the physical capacity, currently at a rate of more than one a week in Australia, many in hideous, violent ways. Clive Deverall, a leading palliative care specialist dying of cancer, killed himself in a public park in order to make a point. Part of his suicide note read, ‘suicide is legal, euthanasia is not’.

At 9.34 am, the public gallery was full, and the morning’s sitting began. Individual MPs were given ninety seconds of ‘holding’ the floor, whilst a low hubbub continued among their peers. Papers flapped and there were chuckles at private jokes. Many MPs fiddled with phones. Granted, speakers summarised such matters as the need for a traffic light, or their fun as ‘Principal for a Day’ at a local school. It wasn’t exactly gripping stuff, but the air stilled when the speaker asked that members pause while ­­­­copies of the Voluntary Assisted Dying Bill were handed out.

Jill’s mother had died in great suffering four weeks before this historic occasion. Personally, I had just finished signing off on post-production for a five-minute short film about my father’s own horrific death twelve years ago from brain cancer, based on my writing about his last weeks and days; a film created to help campaign for the passing of this law.

The VAD Bill presents a new care option, a choice for imminently dying Victorians who are in pain or suffering which can’t be relieved. There will be an historic conscience vote on the bill later in the year, and if this gets the numbers, these dying patients will have the right to ask to die peacefully and a little earlier than they otherwise would, with a neon-green drink of the barbiturate pentobarbital (Nembutal). They will have to jump through some logistical hoops to be eligible, but that’s how it should be – safe and rigorous, to prevent abuse, as has been well-documented in long standing practice overseas.

It’s a mind-bending progressive step for many in the end-of-life care sector, let alone health care in general. It’s an entire paradigm shift. Time after time I hear those against VAD proposing better availability and quality of palliative care instead. I agree with that sentiment heartily, except for one word – ‘instead’. Improving palliative care includes VAD – it is a missing cornerstone of good end-of-life care. We do have decent palliative care, but not enough. It’s patchy, especially in regional areas. And it is missing a vital element – VAD, for those whose suffering cannot be relieved. The two are anything but mutually exclusive. They are part of a continuum of care. What’s needed is a large step back to see the wood for the trees.

Reluctance to consider VAD arises from strong traditional beliefs, from the medical profession’s ingrained imperative to do no harm, from religious views, and from good old fear and stigma around facing up to death. I hear phrases like ‘it should be an adjunct to palliative care’ or ‘a parallel option’, when in reality VAD makes perfect sense as a reasonable and compassionate palliative care option for people who have the capacity to make the decision.

What’s on the table now is considered by many to be the safest, most conservative and stringent framework in the world. You can read about it in the Final Report of the Independent Ministerial Advisory Panel on Voluntary Assisted Dying. As a nurse, a patient, and a carer for others, enacting this framework would give me peace of mind. I also hope that after the conscience vote the law will allow me genuine personal peace of mind. I don’t want it just at the pointy end when the gasping starts, or when I weigh thirty-five kilograms (and dropping) and have only intravenous sustenance – I want this peace of mind now. I want to wake up in the morning, take my handful of tablets with a vanilla Sustagen spiked with coffee, dress my ulcers, eat a few tablespoons of porridge, write and see if Mum is up for a hydrotherapy session, whilst knowing that should my time come, I’ll be in control. I’ll have a choice.

For now, I have two part-time jobs. Self-care, and convincing state pollies to vote for this law. The peace of mind that I seek is currently on the desks of state MPs. I hope they sit up in bed reading it. I will now start going to their doors, one by one, cap in hand, hauling my frail body in and out of taxis, asking for autonomy and freedom from fear.

A conscience vote, by its very nature, implies that MPs are better qualified than Victorian individuals to make an educated choice about voluntary assisted dying. I’m imploring them to represent the views of Victorians instead. 75–80% of us have been in favour of VAD consistently for years. God forbid a religious politician should vote against us having the right to choose just because they personally worship a God or a text that does not favour it.

But I’m also imploring the Victorian citizen. The anti-VAD lobby is made up of a small group of well-funded, largely church-based organisations who are noisily bombarding MPs with their own collective and individual opinions. My job is to try to help balance that, by asking Victorians to contact their state representative. If you want to take action, you can simply look up the details of your MP at the Parliament of Victoria website.

Call them, email them, but best of all – a letter. Show that you’ve taken time and effort. It works. Tell them why you want this law. Maybe you have been with a friend or nursed a patient through a bad death. Tell them about what it was like. No-one deserves unbearable suffering at the very end of life when we can give them a compassionate choice.

Jill Hennessy, MP, found me talking to her elderly father in the Queens Hall after the morning sitting ended. I was giving him my condolences on the loss of his wife. I pushed my walker to the side, and Jill and I hugged for a suitably long time.

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Nia Sims is a writer, an ex-registered nurse and activist for the rights of the sick and disabled. She lives in Sunshine, Melbourne, with her mum. She volunteers with Go Gentle Australia. The five-minute film (18+ warning) about her experience of her father’s death in hospital can be viewed at stopthehorror.com and the writing that inspired the film is on the ‘story wall’ at the Go Gentle Australia website gogentleaustralia.org.au

Ania, thank you so much for hearing the message of my story and actually taking action. Conscience votes are such a rare opportunity to be heard on issues of the greatest importance. Thank you for raising your voice. Nia x